Pan\u00ed \u0160t\u011bp\u00e1nce (41) diagnostikovali l\u00e9ka\u0159i roztrou\u0161enou skler\u00f3zu\np\u0159ed dvaceti lety. \u201eVe sv\u00fdch jednadvaceti jsem se dozv\u011bd\u011bla, \u017ee m\u00e1m\nnevyl\u00e9\u010ditelnou nemoc, kter\u00e1 m\u011b m\u016f\u017ee dostat na invalidn\u00ed voz\u00edk. To byl\nnep\u0159edstaviteln\u00fd \u0161ok,\u201c vzpom\u00edn\u00e1.<\/p>\n\n\n\n
Probl\u00e9my s hybnost\u00ed kon\u010detin m\u011bla \u0160t\u011bp\u00e1nka u\u017e od sv\u00fdch 16\nlet, na spr\u00e1vnou diagn\u00f3zu v\u0161ak \u010dekala 5 let. \u201ePo\u0159\u00e1d m\u011b brn\u011bly nohy, absolvovala\njsem r\u016fzn\u00e1 vy\u0161et\u0159en\u00ed na ortopedii, kde mi \u0159ekli, \u017ee to je artr\u00f3za, ale sp\u00ed\u0161 mi\np\u0159i\u0161lo, \u017ee si o mn\u011b mysl\u00ed, \u017ee jsem simulant,\u201c popisuje \u0160t\u011bp\u00e1nka. \u201eK brn\u011bn\u00ed\nnohou se p\u0159idala bolest zad, chodila jsem na rehabilitace, kter\u00e9 mi na chvilku\npomohly, pak to ale v\u017edy za\u010dalo nanovo.\u201c<\/p>\n\n\n\n
Jednou, kdy\u017e \u0161la z no\u010dn\u00ed sm\u011bny, se \u0160t\u011bp\u00e1nce motala hlava a\nmyslela si, \u017ee ani nedojde dom\u016f. Dal\u0161\u00ed den j\u00ed na rehabilitaci z\u00e1da \u201enapravili\u201c\na \u0159ekli j\u00ed, \u017ee to bude z\u0159ejm\u011b sk\u0159\u00edpnut\u00fd nerv. \u201ePo n\u00e1vratu dom\u016f jsem byla hodn\u011b\nunaven\u00e1, tak jsem si \u0161la lehnout, ale kdy\u017e jsem se vzbudila, v\u016fbec jsem nemohla\nvst\u00e1t z postele. Kdy\u017e se mi to kone\u010dn\u011b poda\u0159ilo, okam\u017eit\u011b jsem se porou\u010dela k\nzemi, nohy m\u011b v\u016fbec neposlouchaly.\u201c Kamar\u00e1dka ji odvezla do nemocnice, kde se\n\u0160t\u011bp\u00e1nka po t\u0159ech dnech hospitalizace podrobila lumb\u00e1ln\u00ed punkci a dozv\u011bd\u011bla se\ndiagn\u00f3zu.<\/p>\n\n\n\n
Za dvacet let, co nemoc m\u00e1, vyst\u0159\u00eddala n\u011bkolik l\u00e9k\u016f \u2013 l\u00e9ka\u0159i\nje m\u011bnili kv\u016fli nedostate\u010dn\u00e9mu efektu, ale i ne\u017e\u00e1douc\u00edm \u00fa\u010dink\u016fm. \u201ePo prvn\u00edch\ndvou l\u00e9c\u00edch jsem byla neskute\u010dn\u011b unaven\u00e1, v\u016fbec jsem nebyla schopn\u00e1 fungovat.\nT\u0159et\u00ed l\u00e9k p\u016fsobil dob\u0159e, ale proto\u017ee p\u0159i jeho u\u017e\u00edv\u00e1n\u00ed doch\u00e1z\u00ed k oslaben\u00ed\nimunitn\u00edho syst\u00e9mu, ,probudil\u2019 se mi v t\u011ble virus, kter\u00fd by mohl p\u0159i u\u017e\u00edvan\u00ed\ndan\u00e9ho l\u00e9ku zmutovat a v\u00e9st k z\u00e1va\u017en\u00e9 infekci. Tak jsem jej tak\u00e9 musela p\u0159estat\nu\u017e\u00edvat. \u010ctvrt\u00fd l\u00e9k u\u017e mi kone\u010dn\u011b vyhovoval,\u201c popisuje \u0160t\u011bp\u00e1nka.<\/p>\n\n\n\n
V t\u00e9 dob\u011b za\u010dala uva\u017eovat o t\u011bhotenstv\u00ed. \u201eMoc jsem cht\u011bla\nd\u00edt\u011b. Samoz\u0159ejm\u011b jsem si byla v\u011bdom\u00e1 toho, \u017ee budu muset vysadit l\u00e9\u010dbu a \u017ee se\nm\u016f\u017ee m\u016fj stav zhor\u0161it, ale ta touha byla prost\u011b obrovsk\u00e1. \u0158\u00edkala jsem si, \u017ee\nstejn\u011b na tom voz\u00edku jednou skon\u010d\u00edm, tak a\u0165 k tomu m\u00e1m alespo\u0148 po\u0159\u00e1dn\u00fd d\u016fvod.\u201c\nL\u00e9ky tedy vysadila, ot\u011bhotn\u011bla a v 36 letech porodila zdrav\u00e9ho chlape\u010dka.<\/p>\n\n\n\n
Ke zhor\u0161en\u00ed jej\u00edho zdravotn\u00edho stavu ale opravdu b\u011bhem\nt\u011bhotenstv\u00ed do\u0161lo, zejm\u00e9na co se pohyblivosti doln\u00edch kon\u010detin t\u00fdk\u00e1. K l\u00e9\u010db\u011b se\nvr\u00e1tila hned po t\u0159ech m\u011bs\u00edc\u00edch kojen\u00ed. Jej\u00ed stav se zlep\u0161il, i kdy\u017e u\u017e ne na\n\u00farove\u0148 p\u0159ed ot\u011bhotn\u011bn\u00edm.<\/p>\n\n\n\n
Kv\u016fli dal\u0161\u00edmu zhor\u0161en\u00ed nemoci musela \u0160t\u011bp\u00e1nka p\u0159ed t\u0159emi\nlety op\u011bt zm\u011bnit l\u00e9\u010dbu. Na\u0161t\u011bst\u00ed to bylo mo\u017en\u00e9 d\u00edku tomu, \u017ee b\u011bhem posledn\u00edch\nlet se na trhu objevily dal\u0161\u00ed vysoce \u00fa\u010dinn\u00e9 l\u00e9ky, ze kter\u00fdch dnes mohou l\u00e9ka\u0159i\nvyb\u00edrat. Nov\u00fd l\u00e9k sice vedl k \u010d\u00e1ste\u010dn\u00e9 stabilizaci nemoci, bohu\u017eel j\u00ed ale\nzp\u016fsobil poruchu \u0161t\u00edtn\u00e9 \u017el\u00e1zy. \u0160t\u011bp\u00e1nka je v invalidn\u00edm d\u016fchodu, sna\u017e\u00ed se ale\np\u0159ivyd\u011bl\u00e1vat na dohodu o proveden\u00ed pr\u00e1ce, aby zvl\u00e1dla p\u00e9\u010di o syna.<\/p>\n\n\n\n
N\u00e1zor odborn\u00edka<\/p>\n\n\n\n
Zat\u00edmco v roce 2013 m\u011bli neurologov\u00e9 k dispozici 9 l\u00e9k\u016f,\nloni u\u017e mohli p\u0159i l\u00e9\u010db\u011b volit ze 17 mo\u017en\u00fdch prepar\u00e1t\u016f a v r\u016fzn\u00fdch\npokro\u010dilej\u0161\u00edch f\u00e1z\u00edch v\u00fdvoje je 27 nov\u00fdch nad\u011bjn\u00fdch l\u00e1tek.<\/p>\n\n\n\n
\u201eO to v\u00edce roste d\u016fle\u017eitost sledov\u00e1n\u00ed jejich bezpe\u010dnosti.\nData z dlouhodob\u011b veden\u00fdch bezpe\u010dnostn\u00edch registr\u016f uk\u00e1zala, kter\u00e9 l\u00e9ky je\nnap\u0159\u00edklad mo\u017en\u00e9 pod\u00e1vat mamink\u00e1m hned po porodu, a sn\u00ed\u017eit tak riziko atak\nnemoci, kter\u00e9 je u \u010derstv\u00fdch rodi\u010dek bohu\u017eel \u010dast\u00e9. Data o bezpe\u010dnosti l\u00e9k\u016f a\nmo\u017enosti jejich u\u017eit\u00ed p\u0159i kojen\u00ed jsou tak\u00e9 d\u016fle\u017eit\u00e1 pro rozhodov\u00e1n\u00ed mlad\u00fdch\npacientek, zda d\u00edt\u011b po\u010d\u00edt,\u201c \u0159\u00edk\u00e1 prof. Eva Kubala Havrdov\u00e1, vedouc\u00ed Centra pro\ndemyeliniza\u010dn\u00ed onemocn\u011bn\u00ed Neurologick\u00e9 kliniky 1. LF UK a VFN v Praze.<\/p>\n\n\n\n
\u201eBezpe\u010dnost l\u00e9\u010dby je pro n\u00e1s nyn\u00ed nejv\u011bt\u0161\u00ed t\u00e9ma. Vzhledem k\ntomu, \u017ee nemoc propuk\u00e1 v pom\u011brn\u011b mlad\u00e9m v\u011bku, u\u017e\u00edvaj\u00ed pacienti l\u00e9ky cel\u00e1\ndesetilet\u00ed. L\u00e9ky jim bezesporu pom\u00e1haj\u00ed, ale mohou m\u00edt pozd\u011bj\u0161\u00ed ne\u017e\u00e1douc\u00ed\n\u00fa\u010dinky,\u201c vysv\u011btluje neurolo\u017eka doc. MUDr. Dana Hor\u00e1kov\u00e1.<\/p>\n\n\n\n
———————<\/p>\n\n\n\n
Informace o nemoci<\/p>\n\n\n\n
* Jedn\u00e1 se o z\u00e1va\u017en\u00e9 autoimunitn\u00ed onemocn\u011bn\u00ed, kter\u00e9\npostihuje nervov\u00fd syst\u00e9m.<\/p>\n\n\n\n
* Imunitn\u00ed syst\u00e9m likviduje vlastn\u00ed nervovou tk\u00e1\u0148, zejm\u00e9na\nmozek a m\u00edchu.<\/p>\n\n\n\n
* Mezi prvn\u00ed p\u0159\u00edznaky nemoci pat\u0159\u00ed brn\u011bn\u00ed \u010di mraven\u010den\u00ed\nkon\u010detin.<\/p>\n\n\n\n
* Pacienti trp\u00ed poruchami zraku, citlivosti, hybnosti,\nkoordinace a rovnov\u00e1hy. Maj\u00ed probl\u00e9my s \u0159e\u010d\u00ed, tr\u00e1p\u00ed je svalov\u00e9 k\u0159e\u010de, \u00fanava,\nakutn\u00ed i chronick\u00e9 bolesti, zm\u011bny n\u00e1lad, deprese a poruchy pam\u011bti.<\/p>\n\n\n\n
* Pro nemoc je typick\u00e9 st\u0159\u00edd\u00e1n\u00ed obdob\u00ed z\u00e1chvat\u016f (atak) a\nobdob\u00ed zd\u00e1nliv\u00e9ho klidu.<\/p>\n\n\n\n
* Rizikov\u00fdmi faktory nemoci jsou krom\u011b genetick\u00e9 dispozice\nEB virus (Epsteina-Barrov\u00e9 virus), kou\u0159en\u00ed a nedostatek vitaminu D.<\/p>\n\n\n\n
* Nemoc se vyskytuje p\u0159edev\u0161\u00edm ve st\u0159edn\u00edch a chladn\u011bj\u0161\u00edch\nzem\u011bpisn\u00fdch \u0161\u00ed\u0159k\u00e1ch.<\/p>\n\n\n\n
* Roztrou\u0161enou skler\u00f3zou m\u00e1 v \u010cesku okolo 22 000 lid\u00ed.<\/p>\n\n\n\n
* Jejich po\u010det pomalu stoup\u00e1, ka\u017edoro\u010dn\u011b p\u0159ibli\u017en\u011b o 700.<\/p>\n\n\n\n
* Nemoc v\u011bt\u0161inou propuk\u00e1 brzy, kolem 31. roku v\u011bku.<\/p>\n\n\n\n
* \u010cast\u011bji postihuje \u017eeny.<\/p>\n\n\n\n
Tipy pro zdrav\u00ed<\/p>\n\n\n\n
Pohyb je ned\u00edlnou sou\u010d\u00e1st\u00ed l\u00e9\u010dby lid\u00ed s roztrou\u0161enou\nskler\u00f3zou a pom\u00e1h\u00e1 odd\u00e1lit celkovou invaliditu. Cvi\u010den\u00ed p\u016fsob\u00ed tak\u00e9 na psychiku\nnemocn\u00fdch, kter\u00e1 je v p\u0159\u00edpad\u011b pacient\u016f s RS velmi podstatn\u00e1. Je u nich toti\u017e\nprokazateln\u011b vy\u0161\u0161\u00ed v\u00fdskyt depres\u00ed ne\u017e u ostatn\u00ed populace. Nejp\u0159\u00edzniv\u011bj\u0161\u00ed vliv\nm\u00e1 aerobn\u00ed a posilovac\u00ed tr\u00e9nink. Zkusit m\u016f\u017eete ch\u016fzi, nordic walking, kolo,\nb\u011bh, ale tak\u00e9 cvi\u010den\u00ed doma nebo v t\u011blocvi\u010dn\u011b na rotopedu, ch\u016fzi na b\u011b\u017eeck\u00e9m\np\u00e1se, veslov\u00e1n\u00ed, stepper. Posilovac\u00ed cvi\u010den\u00ed se doporu\u010duje i p\u0159i \u00fanav\u011b, kter\u00e1\npat\u0159\u00ed mezi \u010dast\u00e9 symptomy nemoci. Cvi\u010den\u00ed toti\u017e pom\u00e1h\u00e1 zvy\u0161ovat svalovou s\u00edlu,\na t\u00edm zlep\u0161ovat funkci horn\u00edch a doln\u00edch kon\u010detin.<\/p>\n\n\n\n
Alena Ben\u00ed\u0161kov\u00e1<\/p>\n\n\n\n
denik.cz<\/p>\n\n\n\n
https:\/\/www.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" Pan\u00ed \u0160t\u011bp\u00e1nce (41) diagnostikovali l\u00e9ka\u0159i roztrou\u0161enou skler\u00f3zu p\u0159ed dvaceti lety. \u201eVe sv\u00fdch jednadvaceti jsem se dozv\u011bd\u011bla, \u017ee m\u00e1m nevyl\u00e9\u010ditelnou nemoc, kter\u00e1 m\u011b m\u016f\u017ee dostat na […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":2052,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-36446","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/36446","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=36446"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/36446\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/2052"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=36446"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=36446"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=36446"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}